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  #3706  
Old 10-16-2009, 06:31 PM
christine2 christine2 is offline
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Posts: 360
Just for the record, Dr Rivard did not argue about the out of brace x ray. He did indicate that it was not necessary. I understand his reasoning and in hindsight feel that the x ray was unnecessary. Dr Rivard has told me over and over that my daughters treatment is my decision. He has never insisted on anything and by far has been the most compassionate, professional Dr I have delt with.

Thank you everyone for you nice comments, my family feels very much at ease and relaxed right now. It's a nice place to be.
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from CT, USA
6 year old daughter diagnosed 7/06 33* T9

in Spinecor since 8/06
8/06 11*!!!
3/07 5*!!!
8/07 8*!!!
2/08 3*!!!
10/08 1*!!! or as Dr Rivard said "it might as well be 0"
4/09 Still holding @ 1*
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  #3707  
Old 10-16-2009, 06:54 PM
mamandcrm mamandcrm is offline
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Posts: 150
Hi Christine, that's wonderful news for you and your family. How old is your daughter now? I'm sure it's in the thread somewhere but...anyway, enjoy your relief.

Chris
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mamandcrm

G diagnosed 6/08 with 25*
Providence night brace
OOB xray 35* 12/08
Rigo-Cheneau brace full-time
OOB xray 5/09 28*
OOB xray 9/09 14*!!!! (now 8 yrs old)
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  #3708  
Old 10-16-2009, 07:03 PM
christine2 christine2 is offline
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My Goodness Chris you are also having excellent results!! My daughter is 9 now. We still have a long road ahead. Sometimes I feel like it will be forever till we are out of the woods but it will all be worth it, I hope!!
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from CT, USA
6 year old daughter diagnosed 7/06 33* T9

in Spinecor since 8/06
8/06 11*!!!
3/07 5*!!!
8/07 8*!!!
2/08 3*!!!
10/08 1*!!! or as Dr Rivard said "it might as well be 0"
4/09 Still holding @ 1*
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  #3709  
Old 10-17-2009, 11:56 AM
emarismom emarismom is offline
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Join Date: Sep 2005
Posts: 180
I have been on this road for 5 years now Christine, and there are moments when I am just so tired from it all and other moments where I am so grateful, because it really could be much worse! The worse times are right before each new xray.

Emily is almost 11 and has grown 1 1/4 inch since June. I think we are starting in the "most dangerous time". We haven't been as lucky with such great results. Most recent oob was 27

Will be going next month for an in brace-Keeping my fingers crossed.
__________________
Emily's mom-10 years old
28 degree scoliosis 9/04
Chiari Malformation/SM decompressed 11/04
17-24 degrees 11/04-6/07
Wearing Spinecor Brace since June 07
18 degrees in brace 12/08
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  #3710  
Old 10-17-2009, 04:12 PM
christine2 christine2 is offline
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Posts: 360
Hi Emarismom

Good luck w/ the x ray. It is very nerve wracking. Thanks for the pep talk. We are doing the best we can. It must be hard facing "dreaded puberty" with or w/ out scoliosis.
__________________
from CT, USA
6 year old daughter diagnosed 7/06 33* T9

in Spinecor since 8/06
8/06 11*!!!
3/07 5*!!!
8/07 8*!!!
2/08 3*!!!
10/08 1*!!! or as Dr Rivard said "it might as well be 0"
4/09 Still holding @ 1*
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  #3711  
Old 11-02-2009, 03:39 PM
Snowwhite832 Snowwhite832 is offline
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Join Date: Oct 2009
Location: Maryland
Posts: 2
to pooka1

Not even sure I'm doing this right,
but a big HUGE thank you for your kind words they were and are
very calming. I Shall call childrens national and see if they have a
SRS scoliosis research society person there, I know my appointment is with
a dr who specializes in childrens scoliosis and that, will be on Mon, Nov 9 and oh boy am I going to have a list of questions.

3 Days ago I didn't even know what Cobb was!

trying to read things, and looking up words at the same time. And YOU have already answered a huge question I had ! (thank you ) ...being totally ignorant here,
and reading through so much this weekend ...I did know if the , number, is
cumulative, or specific. I know the 18% is the only one I have to worry about now.

Another question for you , or anybody else out there,
and yes call me Snow,
any recommended books I can order up...I totally see knowledge is power, with this, and wanna feel like I have some power? (despretely) right now I'm just doing what the doctor tells me, (even if I dont understand half of it)

and thank you, for the vote of confidence, swimmingly, I'm not so sure,
but trying!
snow
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  #3712  
Old 11-02-2009, 05:19 PM
concerned dad concerned dad is offline
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Posts: 472
Quote:
Originally Posted by Snowwhite832 View Post
maybe alot of you, werelike me, at one point
Hi Snow,
yes, most of us parents can totally relate to what you are going through right now.

I cant recommend any books. It would be good to educate yourself as much as possible so you can speak with the doctor and it sounds like you are well on your way.

I suspect that Linda will move your post out of this thread when she comes across it. Keep an eye out for the new location.

Dont hesitate to ask us any questions but remember, we are just parents like yourself with no formal training. We can just offer our opinions. They often differ.

And thank you to both you and your husband for the sacrifices you are making for our country.
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  #3713  
Old 11-02-2009, 10:54 PM
Snowwhite832 Snowwhite832 is offline
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Join Date: Oct 2009
Location: Maryland
Posts: 2
thanks concerned dad

I've read a ton of your posts over the weekend,
Your so ..smart about all this stuff
thanks for your kind words about my family and husband
lots of ..accolades (if I spelled that right, probably not) a few years ago
not many these days, though us as a family have lived with him
being in the middle east, about half the time , since 2002 or pretty close,
a big deal back then it seems, but now a days, except for me and kids, no big deal.
You mentioned moving the post, I'm probably posting in the wrong place,
where would be the best place for a newbie?

and, I started here, cause ..spinecore, good, bad, my savior if the watch and see, I can't deal with , or ...also , sortof reminds me of (please nobody get mad, I am a newbie) the ole medicine exlire guy , it'll cure anything and everything, ?
It's why I posted here, anyways, I already contacted them , pre-emtively
before even hearing for childrens nation hospital, an expert,
cause I'm afraid,
cause my son is so young
and he's so close to the curve 3% off,
I want action, I want ...to DO something
and from everything I've read, i'll have to wait
and, are there any ..blogs to complain about family members ?
I didn't see any
I have one brother, this weekend, head football coach yelling at me,
about surgery, my son isnt even, after reading up, a canidate for brace,
the other
saying, I know nothing and untill I talk to specialist, nothing is really real
it's all conghetore. (and I'm a fruit cake listening to people online)
which , I'm not, takign information and trying to research, doing exactly what doctor tells me do,
even though I dont understand anything , or what she's saying.

in short, I blogged here, cause ..after reading, I figured I'd bring my son ,
to one of those spinecore things, in NY in dec, if ...the childrens national hostipal specialist, doesnt ...do anything ? next week at appt,
wait and see ..not sure If I can, thinkng maybe I should but I dont know
I don't know ..even excerises, pt , whatever , wanna do something feel so helpless.
snow
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  #3714  
Old 11-03-2009, 06:40 AM
mariaf mariaf is offline
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Join Date: Aug 2004
Location: ny
Posts: 957
Quote:
Originally Posted by concerned dad View Post
I suspect that Linda will move your post out of this thread when she comes across it. Keep an eye out for the new location.
Yes, I just replied to you, Snow, on another thread - I think entitled "Spinecor Brace for Adults".
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mariaf305@yahoo.com
Mom to David, age 10, braced June 2000 to March 2004. Vertebral Body Stapling 3/10/04 at Shriners Hospital Philadelphia for 40 degree curve. Currently holding around 25 degrees; Contact info for Shriners: 1-800-281-4050 or janetcerrone@comcast.net

link to VBS Website: www.vertebralstapling.com
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  #3715  
Old 11-03-2009, 03:59 PM
Ballet Mom Ballet Mom is offline
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Posts: 305
Quote:
Originally Posted by concerned dad View Post
Hi Snow,
yes, most of us parents can totally relate to what you are going through right now.

And thank you to both you and your husband for the sacrifices you are making for our country.

I agree Snow, thank you for your family's sacrifices!
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  #3716  
Old 11-03-2009, 06:13 PM
mamandcrm mamandcrm is offline
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Join Date: Oct 2008
Posts: 150
Snowwhite832,

You will find SRS specialists at Children's National. Just FYI, parking can be horrific there (in the parking garage) so go early so you don't stress about getting to your appointment (they do have a valet, as well, which IIRC is either free or nominal)...unless you are going to the Fairfax annex (I see you are in MD), where it's not a problem. Be sure to make a list of all your questions so you don't get "lost" during your appointment (it's easy to forget everything once you're in there), and not be shy about asking the doc any additional questions about anything you don't understand that comes up in the appointment. Your doc will not be a spinecor fan, so don't be surprised by that, very few are.
__________________
mamandcrm

G diagnosed 6/08 with 25*
Providence night brace
OOB xray 35* 12/08
Rigo-Cheneau brace full-time
OOB xray 5/09 28*
OOB xray 9/09 14*!!!! (now 8 yrs old)

Last edited by mamandcrm; 11-04-2009 at 05:51 AM.
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  #3717  
Old Yesterday, 06:00 AM
emarismom emarismom is offline
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Join Date: Sep 2005
Posts: 180
Well we had an xray done yesterday. Emily's curve is 17 degrees in brace. I'm okay with that considering her age and amount of growth the past few months. Last xray (6/09) she was 27 degrees out of brace. So the brace seems to be giving her some correction, we will stay the course at this time.
__________________
Emily's mom-10 years old
28 degree scoliosis 9/04
Chiari Malformation/SM decompressed 11/04
17-24 degrees 11/04-6/07
Wearing Spinecor Brace since June 07
18 degrees in brace 12/08
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  #3718  
Old Yesterday, 08:21 AM
jillw jillw is offline
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Join Date: Aug 2007
Posts: 317
Great news!!!! What a nice reduction since the last xray - especially since she's approaching that "dangerous time" of growth. Woo hoo!
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Mom to Katie, 8, who was diagnosed in 8/07 with a T17/L 11.
-Put in spinecor 10/16/07: 19T/13L out of brace; 10T/15L in brace; -Nov 07: 3T/4L in brace; -April 08: 6T/3L in brace; -Oct 08: 3T/6L in brace; - March 09: 2T/5L in brace and 20T/? out of brace. -Aug 2009: 1T/2L in brace.
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